Monday, June 17, 2013

Uncertain...

Things with Miss Lucy have not been good. Sadly the boost we were hoping to get from the blood transfusion two weeks ago was not the answer to her problems, not that we really thought that it was. Lucy has numerous issues, and as our wise(aleck) doc pointed out to me tonight when I asked him what he thought could be causing her most recent issues he responded with, "Do you mean mitochondrial disease?".

We are currently sitting in the ED waiting for a bed upstairs.

Lucy has declined neurologically over the past month, but even more so over the past few days. In addition to sleeping all of the time, she is weak, slow, "out of it" looking. Her eyes are different, she has a glossy eyed look about her now most of the time. Even more dramatic is her decrease in muscle tone, she was weak before, but now it's even worse! We are suspicious that she may have suffered a possible metabolic stroke. Unlike a typical stroke which can be detected via a CT scan metabolic strokes can not, there really is no way of knowing for sure other than symptoms and lab work. Her CT scan looked normal, aside from brain atrophy which is nothing we didn't already know.

We are looking into other possibilities, but at the moment there is so much uncertainty. Blood and urine cultures are cooking, and labs of all sorts have been ordered. We will discuss things in the morning with our doc. As always we are praying for clarity, and for something treatable.

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FOR THE LOVE OF LUCY RESEARCH FUND

In loving memory of Lucy Grace Marlett, the bravest five-year-old girl we know. Please help us to find a cure for Mitochondrial Disease by clicking on the image and donating to the "For the Love of Lucy Research Fund" established by her family and the UMDF. Thank you for your love and support!

ENERGY FOR LIFE WALKATHON

UNITED MITOCHONDRIAL DISEASE FOUNDATION

We are All the Marletts, a family of six trying to live life to its fullest! My husband and I fell in love at a young age and dreamed of being married, having a family, and growing old together… Even though our life is what we hoped it would be, we could never have imagined what GOD had in store for us along the way. Being parents to four remarkable kiddos has proven to be MORE in every way! When our youngest was born, although we didn’t know it right away, we were given the privilege and challenge of raising a “special child”, a medically complex child. Since starting this blog, Lucy has been diagnosed with Mitochondrial Disease, a progressive degenerative disease of energy metabolism. Even though this is a blog about our life as a family, I write often about Lucy’s medical issues. If you care to read about the trials and tribulations of raising four children, the joys and hardships of our family life, the emotional roller coaster ride that raising a medically complex child puts one on, and the love that pours from my heart onto the pages of this blog then…welcome!